Shortly after my then-85-year-old mother was diagnosed with a brain tumor, my brother and I accompanied her to meetings with several specialists. We were trying to determine what, if any, treatment would make the most sense for her.
My mother was inclined not to pursue any treatment. The only thing that concerned her was the fact that my niece’s wedding was coming up in three months. She was willing to consider anything that would let her live long enough to be there for it.
The radiation oncologist we met with recommended stereotactic radiosurgery. He explained that it would target the tumor specifically. This was instead of whole brain radiation, which would attack, well, the whole brain.
My brother, always something of a science and technology geek, asked a lot of questions about the mechanics of stereotactic radiosurgery. The oncologist replied in great detail, while my mother sat quietly. It was as if we were talking about someone else’s illness.
But, from my perspective, there was plenty the oncologist hadn’t talked about. Questions like how many elderly patients had she given this treatment to? What were the results? Were there side effects? Did the treatment improve or detract from the patients’ quality of life?
So I asked. The answers weren’t encouraging. I thought, do we really want my mother to be, in essence, a guinea pig?
Perhaps you are facing a serious illness or managing a chronic condition. Making the right decisions depends on understanding your diagnosis, prognosis and the implications for your treatment plan. That’s the very basis of informed consent.
In the best of circumstances, you are a partner in this process. Your physician is your teacher and guide. But if your physician communicates badly, as so many do, you may find yourself lost in a haze of medical or technical jargon. You may feel rushed through a discussion or not fully understand the risks and benefits of a recommended treatment. So it’s up to you to ask the questions you need answers to, before you can proceed.
Your doctor should ask you some questions too. They should include what you already know about your condition and what you still want to know. They need to know what type of information would be most helpful to you. For example, do you want to know about statistics and research?
Your doctor should also acknowledge your emotional response as you begin to absorb possible unwelcome news. They should not let you leave without a clear idea of what the next steps should be.
The truth is, many of us really don’t fully hear and comprehend unpleasant news when we hear it. Just hearing the word “cancer,” as an example, can lead to the rest of the discussion to sound like a noisy convention of bees: bzzzzzz bzzzzz.
Don’t minimize the possibility that bad news will affect you. Dramatically. Can you prepare for that possibility? It helps to understand your own style of learning. That will help you navigate through the whole process of care. You might want to write down a list of questions before your appointment. Or take notes during your meeting with your physician.
Another option is to record the conversation (thank you, digital recorders and voice recorder smartphone apps!) This allows you to review the conversation later and hear what you might have missed.
You may also want to bring someone to your appointment. Ideally this should be the person who will be involved in your care and advocating for you. This should be someone who can ask the questions that you may forget to ask as you’re absorbing the shock of unwelcome news.
One helpful source of guidance is buried deep inside the website of the U.S. Department of Health and Human Services. It is some very helpful advice and videos from the Agency for Healthcare Research and Quality. It offers lists of a number of questions for you to ask your physician about your diagnosis or condition. There is even an interactive “question builder” that you can create based on a variety of conditions. It’s now available as an app.
Communication is such a critical skill for physicians. There is, however, very little training that physicians get in medical school or in residency. Now there is a growing cottage industry using online learning, videos, social media and apps to help. This is in addition to in-person continuing education courses for doctors.
The nonprofit VitalTalk is one of the leaders in the field. It stresses that communication skills can be learned, with practice, a map to follow and feedback. Its website features videos and a dozen one-page guides that cover a range of topics. The guides are simple, clear-cut and eminently sensible.
Ultimately, my mother opted for whole brain radiation, not the stereotactic radiosurgery. It had its side effects, which we had expected, but she did get to go to my niece’s wedding. And stayed until the very end.
Have you ever had to have a difficult conversation with a doctor? Did you feel that you knew the right questions to ask? Do you think your doctor had good communication skills? Please join the conversation.
Tags Medical Conditions